Editorials

The damage done to kin of Hansen's disease patients

The Kumamoto District Court ruling last week clearly recognized that the government’s policy of segregating Hansen’s disease patients — which was maintained for nearly 90 years until the Leprosy Prevention Law was finally scrapped in 1996 — exposed not only the patients themselves but their family members to serious discrimination and prejudice that caused irreparable damage to their lives. Instead of trying to evade its responsibility, the government needs to face up to the damage done to the lives of relatives of the patients and take long overdue remedial steps.

The lawsuit on which the Kumamoto court handed down the ruling was filed by more than 500 kin of former patients of the disease, who called on the government to pay ¥5.5 million in compensation to each plaintiff. The court awarded a total of some ¥376 million to 541 of the 561 plaintiffs in the first judiciary decision holding the government responsible for the plight of the patients’ relatives under the segregation policy.

While the government offered an apology and compensation to the former patients after the same district court ruled in 2001 that the segregation policy — which was pursued without medical grounds — was unconstitutional, it has refused to accept blame for the hardships suffered by the patients’ families. Since the relatives of the former patients took their case to court in 2016, the government maintained that the segregation policy did not apply to them, and that the prejudice and discrimination against the patients likewise did not extend to them.

However, it is undeniable — as the ruling acknowledged — that the government’s policy of forcing the patients into state-run sanatoriums fostered and spread the prejudice in society that Hansen’s disease is a horrible, infectious disease, thereby subjecting not just the patients but their family members to severe discrimination in various aspects of their lives — from interactions with neighbors to finding work and getting married.

Segregation of Hansen’s disease patients began in the Meiji Era in the wake of criticism from other countries. Following enactment of the first law on preventing the disease in 1907, the government took steps to send the patients to state-run sanatoriums — a move that bred the false public perception that it was a highly infectious disease, even though in fact it was not very contagious. At the end of the 1920s, a nationwide campaign was launched to force the patients into sanatoriums. The original Leprosy Prevention Law was established in 1931, and the segregation policy was maintained into the postwar years under a new law of the same name enacted in 1953 — until it was abolished in 1996.

At its peak in 1955, more than 10,000 patients a year were segregated under the policy. Along with people with intellectual disabilities, mental illness and hereditary diseases, Hansen’s disease patients were also targeted by the now-defunct Eugenics Protection Law, which subjected more than 20,000 people to sterilization — even against their will — to “prevent the births of inferior offspring.”

The segregation policy continued even though cures for Hansen’s disease were established in the United States by the 1940s, leaving the patients — and their relatives in many cases — isolated from society. Due to widespread prejudice against the disease, many of the patients’ relatives had trouble finding decent jobs or marrying — or were forced to quit their jobs or get divorced when their ties to the patients were made known — while others hid the fact that they had family members living in the sanatoriums.

As examples of the damage done to the patients’ kin, the district court said many of the relatives were rejected by schools, ostracized in their hometowns, discriminated against in marriage, turned down for jobs and had “their choices in life restricted,” such as their personal relationships or career path. The segregation policy, the court ruled, established “a sort of social structure that subjected the patients’ relatives to prejudice and discrimination by a majority of the public” and stood in the way of the patients and their kin forming a family bond. Specifically, the court ruled that it was illegal for the state not to have ended the segregation policy by 1960 at the latest — by which time medical advances warranted its abolition — and neglected to take steps to eliminate discrimination and prejudice against the disease.

People familiar with the issue say that even today many relatives of the former patients hesitate to speak up out of fear of discrimination. Due to the deep-seated social prejudice, it has long been difficult for the patients’ kin to come forward in such large numbers. The government needs to listen to what the patients’ kin have gone through in their lives and explore what can be done to make up for the damage done.

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